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Project Deaf India: Helping Those with Hearing Loss

Recently Dr. Desai sat down with AudiologyOnline's Managing Editor Dr. Carolyn Smaka for an interview to discuss his mission and Project Deaf India.

“I retired in 1990,” Dr. Desai said ironically. “With retirement, I saw two alternatives – play golf or become a beach bum.” Neither appealed to this energetic man who, instead, in retirement, turned his focus on helping others through the foundation of Project Deaf India – a program that helps Indians with hearing loss in a wide variety of ways.

“When I retired, with my daughter Anjali as my inspiration, I decided that I should do some work with the poor, deaf children of India.” Anjali was born profoundly deaf. “As you know, India has one of the highest number of deaf people, children particularly, in the whole world.

So I founded Project Deaf India, and I’m very, very happy that after 10 years of working hard, the project is paying off.” So much for Dr. Desai’s “retirement,” but clearly, this energetic ambassador for better hearing is doing something he clearly enjoys. His excitement for Project Deaf India is evident when given the opportunity to share the project’s history, activities and goals.

Dr. Raj Desai

The Roots of Project Deaf India

The project began with a newspaper article Dr. Desai received from a friend. In it, the reporter wrote about a remote village in which 20% - 30% of the population was deaf. Dr. Desai explains. “Even as a doctor I couldn’t believe why there should be about 30% deaf out of [a population of] 500 in this distant village in India. Sure, we all know that India has poverty, India has hygiene and sanitation problems, but all of this couldn’t seem to account for 30% deafness.”

Dr. Desai was determined to conduct some field research. He received help from the National Institute of Health, and cooperation from the Indian Institute of Medical Sciences in Delhi.

“Despite all of the obstacles – no electricity, no running water, no paved roads to these remote villages – we went…and investigated. We made a video entitled “Silent Village” that got a lot of attention, both from the Rotary [Rotary International], who did an article on it for a Rotary publication that is distributed throughout the world, and from others. That’s how Project Deaf India started,” this humanitarian explained in his interview with AudiologyOnline.

Readers can view “Silent Village” at ProjectDeafIndia.org to learn more about the work of Dr. Desai’s team in discovering how these village populations communicated – something required to carry on everything from commerce to celebrations.

Desai explained the unique problem he and villagers face. “Sign language is different around the world. There’s Japanese sign language, French sign language, American sign language and so forth.

India is a challenge because it has 38 languages recognized by the government in the whole country. They are totally different languages. If you live in the south, you don’t understand the language of the north and vice-versa. At the present time, most deaf people in India now use a combination of body language and a type of sign language combined together”

It doesn’t take much thought to realize that (1) this is hardly an effective, accurate means of communicating and (2) the deaf population remains isolated, even among the individuals who make up the deaf and heard of hearing groups within the country.

The difference in language presents a stumbling block not found among deaf students in America. Whether from the Deep South or the Great Northwest, the most recognized form of sign language that is used and taught is the United States is American Sign Language (ASL). According to Karen Nakamura of DeafLibrary.org, ASL is a “complex visual-spatial language that is used by the Deaf community in the United States and English-speaking parts of Canada. It is a linguistically complete, natural language”; however, shares no grammatical similarities to English.

A Unified Sign Language for India: Bollywood to the rescue

“For the past 10 years,” explained Dr. Desai, “a colleague of mine has been working on making a common sign language based on Hindi [one of the 38 recognized languages].

The purpose of my deciding to use Hindi as the basis for a common sign language was very simple. India has the largest film industry in the world, producing about 1,000 to 2,000 films every year. Everybody loves these extremely popular films – it is the most common form of entertainment. If all people understand Hindi in movies, why shouldn’t they speak Hindi in sign language?”

The Many Objectives of Project Deaf India

Mother and baby await newborn hearing screening

In addition to the creation of a unified signing language, Project Deaf India has set a number of goals for its dedicated staff of hearing professionals lead by Dr. Desai.

“The first goal was early detection of deafness and intervention. This is what is now common practice in the UK and US. Any child that is born in a hospital or any birthing center is tested for deafness, everywhere in the United States. As you know, the portable equipment that is used to screen babies for hearing loss costs about $5,000 or so and the results are very accurate.”

Dr. Desai continued. “Of course follow-up, such as with intervention and amplification, is also critical. In India, many children are born with hearing loss that is medically treatable, so in a matter of a few months, many children can be helped just with intervention or surgery.

In the US, many children who are identified at birth are fit with hearing aids by age 1 – 2 months. This is very important for the development of speech, language and cognition, and is of course the long term goal in India as well.

But my second immediate goal with Project Deaf India was to decrease the large incidence of deafness. India has a National Vaccination Plan but it does not include measles and rubella vaccination. When they are included, it will decrease deafness and also blindness drastically in India.”

Dr. Desai was able to speak with the president of India, not a politician but a man of science, but as Dr. Desai puts it, “I thought my words fell on deaf ears.”

Project Deaf India Grows

That’s why Dr. Desai was a bit surprised one day. “I heard from a fellow Rotarian in India who told me, "You know, your projects are going very well." And I could hardly believe it. So I approached the chief of the India Health Ministry, and she confirmed it. “Yes,” she said, “we have started a program called "Prevention and Early Detection of Deafness in India”.

Dr. Desai tackled another major problem through Project Deaf India. “One major obstacle to the goal of early detection and intervention was that there were no trained audiologists in India.

There are only 1,000 audiologists in the whole country of one billion people. Neither is there ENT (ear, nose and throat) doctors to detect deafness accurately. So this program that has been started, at the cost of approximately $700 million, will train enough ENT doctors and audiologists by 2010, which is just around the corner from now.”

Dr. Dave Citron, audiologist and owner of South Shore Hearing Center near Boston, and his team were instrumental in beginning the organized process of implementing a newborn hearing screening and follow-up program.”

Working through the Rotary, Dr. Citron’s efforts to implement an early diagnostic protocol is complete and Project Deaf India continues to not only meet hearing health objectives, but to create new goals to improve the hearing of India’s one billion citizens.